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Comments on P2P draft report are due by 16 Jan 2015

Discussion in 'Action Alerts and Advocacy' started by Denise, Dec 20, 2014.

  1. Denise

    Denise Senior Member

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    Note - when writing comments, the instructions ask that the corresponding line number of the report be referenced.


    Comments will be accepted through Friday, January 16, 2015. Please reference the corresponding line number of the report, and submit your comments via:

    Email
    prevention@mail.nih.gov

    Or

    Postal mail
    Office of Disease Prevention
    National Institutes of Health
    ATTN: Paris A. Watson
    6100 Executive Boulevard, Suite 2B03
    Bethesda, MD 20892”

    https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs/public-comments

    https://prevention.nih.gov/programs...rkshops/me-cfs/workshop-resources#draftreport
     
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  2. Esther12

    Esther12 Senior Member

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    Does anyone know what's happening with the full report, rather than just the executive summary? Will the full report simply be this and the evidence review, and maybe public comments too? Or are they writing the full report right now, and getting comments in earlier might help improve that?

    Anyone familiar with the process?
     
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  3. Denise

    Denise Senior Member

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    I know ODP has been asked this question and people are awaiting an answer. (I am one of the people who has asked.)

    I wonder if the terms draft executive summary and draft report are being used interchangeably.
    I base this guess on the page for the Sept opioid P2P report:
    https://prevention.nih.gov/docs/programs/p2p/ODPPainPanelStatementDraft_10-02-14.pdf
    which also uses the terms draft report and draft executive summary.
     
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  4. Wally

    Wally Senior Member

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    @ Esther,
    Not sure if you saw my earlier post (Reply #214 on page 11 at http://forums.phoenixrising.me/inde...draft-report-is-out.34480/page-11#post-537036). I don't have answers to your questions but since I have similar questions to yours, I have written to the Director of the ODP, David Murray, to see if we can get some clarification on this process. If you have other questions that were not included in my e-mail you might also want to write to him.
     
    Last edited: Dec 20, 2014
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  5. catly

    catly Senior Member

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    @Wally, thanks for writing to Mr. Murry, hopefully you will get a response before the comment period closes.
     
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  6. Wally

    Wally Senior Member

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    @catly,
    Yes, it will be interesting to see how quickly a reply will be received especially because the holidays are now upon us and people could be out of the office on vacation. Since I received such a prompt response to my first inquiry to Dr. Murray on Thursday Dec. 18th, (by contacting him directly through his e-mail address), I hope that he or his staff will once again provide a timely response. I will follow up on Monday (via phone) to make sure that my message was received. ;)
     
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  7. Ember

    Ember Senior Member

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    I notice that the Final Report on Polycystic Ovary Syndrome is posted as an Executive Summary.
     
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  8. Denise

    Denise Senior Member

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    I heard back from ODP.
    The terms "draft executive summary" and "draft report" are used interchangeably and that what is posted is what we are to submit comments on.
     
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  9. Wally

    Wally Senior Member

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    Retention of Public Comments for the ME/CFS P2P Draft Executive Summary Report/Draft Report.

    Per my conversation yesterday (1/14/2015) with Wilma Peterman Cross, Deputy Director at the ODP/NIH, Public Comments submitted in response to the Draft Report will be retained and subject to a FOIA (Freedom of Information Act) request. I was told that the ODP had not planned to release the comments due to concerns that the comments might contain personal identifying information. To address this privacy concern, if these comments are requested to be reviewed by the public, a FOIA coordinator will review the comments and be responsible for claiming any exemption from release and/or will redact the comments to address these privacy concerns prior to release of these documents.

    The individual at the NIH who will handle any FOIA request for these comments is Suzanne Freeman, who is the designated for FOIA Coordinator for the Division of Program Coordination, Planning, and Strategic Initiatives (DPCPSI). Note, the e-mail address for Suzanne Freeman is care of the NIH Blood and Lung Division, but this is the correct address for Suzanne Freeman in her capacity as the FOIA coordinator for any NIH/ODP/P2P document requests. See, http://www.nih.gov/icd/od/foia/coord.htm

    I was able to talk to Ms. Freeman yesterday to understand how the FOIA request will be handled. By specifying in the request that the documents requested are the Public Comments to the NIH/ODP ME/CFS P2P Draft Executive Summary/Draft Report, it will allow the location of the comments to be readily identifiable. In addition, if the request includes a statement that redacted copies of these documents will be acceptable then this will allow the request to be completed more quickly. Otherwise, exemption notification will first need to be sent out if there is personal identifying information within the comments that needs to be protected prior to release of the documents.

    Since there is usually a cost involved in obtaining copies of documents under a FOIA request, you can specify in your request a maximum dollar amount that you would be willing to pay to retrieve/copy these documents. By Monday, January 19, 2015 (following the close of the Public Comment period on 1/16/2015) the NIH/ODP may also be able to provide an estimate of the number of Public Comments that were received as part of this process.

    My plan will be to make a FOIA request for these documents on Monday, January 19th. My request will state that I will accept redacted copies of these documents. Ms. Freeman will be out of the office from Wednesday, January 21st through the end of January, so I want to be able to coordinate this request with her prior to her being out of the office. Notwithstanding that Ms. Freeman will be out of the office during the last part of January, she said that she will be monitoring e-mail and she will forward any requests that are received during this period to her staff.

    While, there is no guarantee that these documents will be received before the final P2P report is released or before February 10, 2015 (date of the release of the IOM Report), it is more likely that by allowing for redacted copies of the comments, the request can be expedited. Once the redacted copies are reviewed, you can still do another follow-up FOIA request that does not agree to the receipt of redacted copies. This would allow for identification of the exemptions (or exclusions) used to redact the comment(s) and an appeal could be made if you disagree with these decisions.

    Once I receive copies of the Public Comments, I will coordinate with MEAdvocacy.org to try to get this information posted on their website for viewing. I will be requesting that the documents be sent to me in electronic form rather than with paper copies.

    If you are interested in understanding more about filing a FOIA request with the NIH, as well as the general requirements for any FOIA request, here are the links that explains this process in more detail - http://www.nih.gov/icd/od/foia/index.htm#requests and http://www.foia.gov/how-to.html

    I also plan to file a FOIA request for public comments/questions that were submitted as part of the 2 day ME/CFS P2P Workshop that took place in December. However, I plan to file this request separately from the request for the Public Comments to the Draft Report.
     
    Last edited: Jan 22, 2015
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  10. Denise

    Denise Senior Member

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    I hope everyone who has or will file FOIAs for the comments and questions is successful in getting them. (I seem to remember at least one other person has said on PR that they submitted a FOIA and I believe others have done so also already.)
     
  11. Wally

    Wally Senior Member

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    @Esther12,
    I don't have an answer to most of the questions you have asked with the exception of whether it would be helpful to get comments in early.

    The ODP stated in a phone call that I had with them yesterday (1/14/2015) that the Public Comments are not reviewed until the end of the submission period. The comment submission period ends at 11:59 pm, Friday, 1/16/2015. So, the timing of when comments to the Draft Report were submitted would not appear to make a difference to when these comments will be reviewed by the P2P Panel.
     
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  12. jimells

    jimells Senior Member

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    I submitted a FOIA request for the public comments via the HHS website on Jan. 13. So far the only response I have received is a postcard (??) notifying me that my request has been forwarded to NIH, Building 31, Room 5B35, 9000 Rockville Pike, Bethesda, etc. along with a phone number. Is "9000 Rockville Pike" really the same address as the street address "31 Center Drive" given on their website?

    @Wally thanks for the detailed post on the NIH response. I'll have to send an email to Ms Freeman to find out if they actually have my request. I'm guessing that sending a request directly to Ms Freeman might work better than using the HHS website.

    My New Year's Resolution is to submit FOIA requests "early and often", just like voting...


    ------
    FOIA request submitted via website 1/13/2015

    Division of Program Coordination, Planning, and Strategic Initiatives
    Office of Disease Prevention

    Regarding the "2014 Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome", I request the release of the public comments on the "Draft Report". A reference to these comments may be found at:

    https://prevention.nih.gov/programs...rkshops/me-cfs/workshop-resources#draftreport

    Public comments on the draft report will be accepted from Thursday, December 18, 2014 through Friday, January 16, 2015

    I request that the documents be released after the close of the comment period.

    I request that the documents be mailed to me as computer files on a CD.


    ------------
    I request a fee waiver because disclosure of the information is in the public interest.

    Release of these documents is in the public interest because they will help advocates and
    the general public to understand how the public comments influenced the final report. The public comments need to be released because they are public, and advocates need to understand the public's reaction to the draft report in order to further their advocacy. The general public has a direct interest in knowing whether or not public comments actually influenced the report writers and the policies that result from the report.

    Information obtained from these documents will be disseminated to the patient commnunity and
    the general public via the "Phoenix Rising" internet forum. I have been an active participant on this forum, where I have posted over 500 messages to date.

    I have no commercial interest that will be advanced by the release of the documents.
     
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  13. Bob

    Bob

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    How quaint! 19th century style comms. Was it delivered via pony and trap?
     
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  14. jimells

    jimells Senior Member

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    No. It came via beat-up four-wheel-drive and was deposited directly into my mailbox, which has not been knocked over by the snow plow this winter (so far!)
     
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  15. Wally

    Wally Senior Member

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    @jimells,
    Sent you a message (conversation) with additional information I have rec'd from the HHS NIH FOIA Coordinator's office. They have acknowledged my request and they are in the process of gathering documents and they have identified the costs that may be charged for this request.

    If anyone else wants to know the potential cost of making a FOIA request you can PM me or I can post the information in a follow-up posting.

    When documents are rec'd in response to my FOIA request they will be hosted/stored on the MEAdvocacy.org website for public viewing/copying.
     
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  16. Hope123

    Hope123 Senior Member

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    I'm glad that people are following up on this issue.

    The piece about not allowing access to public comments because personal information might be included in them is just a lame excuse. The multiple times I have written in (CFSAC, FDA, AHRQ etc.), there have been fair warning that the notes will be public and not to put in personally identifying information. In some cases, the agency involved even has a note that if people wish their comments to be anonymous they should tell staff when they submit so no name is put with the submission on the website.

    If NIH during the P2P process really was sensitive to the needs to the public, they should have put in these statements when soliciting comments, like other agencies have done.
     
  17. Wally

    Wally Senior Member

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    @Hope123,

    I agree it sounded a bit odd to me when I was told that they were not planning to publicly release these documents or even retain them. I thought there had been some type of instruction on the NIH/ODP/P2P website advising people not to include personal information in their Public Comment. However, the instruction for submitting Public Comments in response to the Draft Report longer appeara on the website (perhaps this is because the Public Comment period ended on 1/16/2015) or perhaps I just imagined seeing this. :confused::ill:

    The upside is that this potential problem was caught and the HHS, the NIH and the ODP were put on notice that the Public Comments were of interest to the Public and access to the documents would be expected. :bang-head:;) Perhaps the ODP staff person that communicated this information to me was not aware of the FOIA process and this is why my repeated inquiries were passed on to an ODP Deputy Director to address.
    :rolleyes::cautious:

    P.S. I am also in the process of getting all the written documents submitted to the ME/CFS IOM Committee "by any organization or by individuals who are not officials, agents or employees of the institution". I also plan to make those documents available for viewing. Right now it looks like there are about 258 submissions. While the IOM Report will be publicly released on 2/10/2015, the Committee/Project will not come to an end until 3/22/2015. I have been told by IOM Staff assigned to the ME/CFS Project that information can be submitted thru 3/22/2015. To cover all the bases, there will be two requests made for documentation - one now and one after 3/22/2015.
     
    Last edited: Jan 24, 2015
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  18. Wally

    Wally Senior Member

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    I just received a newsletter from Solve MECFS with information about CFSAC's response to the Draft Report. Apparently, Jennie Spotila had developed an unofficial version of the comments discussed by the committee at the Jan. 13th CFSAC meeting. I went to Jennie's blog to see if she had posted additional information and I sadly learned that her mother has just recently passed away. Here is a link to her blog should anyone want to leave her a message.
    http://www.occupycfs.com/2015/01/22/broken/#comment-112671

    I am not able to connect back into the Solve MECFS website, so I am not able to link to this newsletter to share the unofficial version of the committee's response to the P2P Draft Report, transcribed by Jennie. If someone else is able to obtain this document perhaps it could be posted here and/or elsewhere on the Forum.
     
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  19. Wally

    Wally Senior Member

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    It looks like the connection to Solve MECFS.org is working again. Here is the link to information on their site about the unofficial version of CFSAC's comments to the P2P report. http://solvecfs.org/the-p2p-report-cfsac-drafts-substantive-expert-response/
     
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  20. Bob

    Bob

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